Owning Our Grief

By now, many people across the country have lost someone to COVID-19 or know someone who has. The virus has killed more than 83,000 Americans and 292,000 people worldwide, and the toll is still rising. Mental health experts have been bracing for the collective impact of weathering so much loss, during a time when coming together is prohibited. According to one paper, published in March in the journal Applied Demography, the pandemic will give way to a “tsunami of grief.” We’re not prepared for it.

“America is about to experience an unprecedented loss of life,” wrote study author Emily Smith-Greenway, assistant professor of sociology at the University of Southern California. “It is important that the burden of bereavement, and its potential mental and physical health consequences, is factored into discussions of the public health challenge facing America and all nations.”

Grief, in the simplest terms, means deep sorrow or distress following a death or other form of loss. While grieving is a natural and normal response to personal tragedy, it can still have lasting health effects. For years, studies have linked the stress that accompanies grief to increased depression, cardiovascular disease and mortality risk. Now, grief specialists are sounding the alarm, emphasizing the importance of acknowledging our grief and taking it seriously.

“There’s nothing easy or neat about grief. Grief is a very organic, messy process,” says David Kessler, a leading grief expert and founder of the resource and support site Grief.com. “We want to simplify grief, to say ‘Oh, there’s five stages!’” He’s referring to the five stages of grief famously named by Swiss psychologist Elisabeth Kübler-Ross: denial, anger, bargaining, depression and acceptance. “The stages aren’t linear; they aren’t a map for grief and you’re done.” He should know. Along with Kübler-Ross, he co-wrote On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss.

Even under normal circumstances, mourning can be a painful, lonely process. Symptoms of grief include deep sadness, an inability to focus on anything apart from the loss, and difficulty accepting the death. (Complicated grief, a diagnosable condition, is defined as a grief response that lasts longer than six months and interferes with daily routines. The point at which “normal” grieving becomes a mental health disorder is a topic of debate among grief professionals.)

“Your home life has become your work life for many people. When are you on? When are you off? Grief needs dedicated time.”

Our current circumstances are anything but normal. Feelings of isolation that commonly accompany bereavement are compounded by stay-at-home orders, the absence of regular routines, and restricted access to familiar sources of emotional support, such as seeing friends and family in person.

Grief can also be a response to trauma, independent of personal loss. People are facing anxiety surrounding the virus, experiencing sorrow over being laid off or missing graduation, and stress-reading pandemic updates. By that definition, a lot of the country is experiencing some amount of grief.

“Those feelings of not being able to concentrate, and eating too much or not eating enough or sleeping too much or not sleeping enough, the overwhelming sadness — all that is what grief looks like,” says Kessler. “People have said to me, ‘I don’t know what’s going on, it’s 10 am and I’m exhausted.’ Well, we don’t realize the energy grief takes and how exhausting being in grief is.”

Shortly after the pandemic arrived in the US, Kessler started an online grief support group, as an alternative to in-person groups that could no longer meet. The first day, 1,000 people joined. Now, the group has over 12,000 members.

“Structure helps us grieve,” Kessler says. Having a regular time to meet, as well as a dedicated group of people to connect with. Especially now. “The boundaries are gone,” he adds. “Your home life has become your work life for many people. When are you on? When are you off? Grief needs dedicated time.”

We already had a mental health crisis in the US when the coronavirus arrived and upended our lives a few months ago. More than 50 percent of all Americans will experience a mental health illness at some point in their lifetime, according to the Centers for Disease Control and Prevention. One in 5 people will experience a mental illness in a given year. Inadequate access to care exacerbates the problem. More than half the counties in the US have no psychiatrists.

“There’s an emotional ‘bar tab’ that will come due … It’s going to be for decades that we see the ripple effects of this roll out.”

“There’s an emotional ‘bar tab’ that will come due,” says Megan Devine, psychotherapist and author of It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand. Devine says that in less intense times, you’d typically experience one loss at a time. Now, there’s a saturation of loss. “It’s going to be for decades that we see the ripple effects of this roll out, and those are all mental health challenges that we will be seeing and responding to for a really long time to come, which is overwhelming and daunting, and it’s just the reality. There is so much loss happening right now and so much grief.”

During the pandemic, the CDC advises people to look for common signs of distress like difficulty concentrating, changes in appetite, anger or increased use of drugs or alcohol. The Substance Abuse and Mental Health Services Administration, a government agency, offers grief resources and coping guidance. A lot of the guidance boils down to common sense, such as talking to a friend or family member you trust, or general health advice, such as getting enough sleep and exercising.

Managing mental health while grieving is especially challenging right now. Among other things, people may be deprived of the coping mechanisms they relied on pre-coronavirus. Someone who, for example, used to go hiking when they felt down may no longer have that option. “This is about expanding your toolbox,” Devine says, and finding a new “mechanism for action,” as she calls it. “What other ways can you serve that need? It depends on where you live and how much economic stability you have, but even things like watching a nature show on PBS, or looking at photographs of a hike you took. Is it ideal? No. We are in emotional triage, we have to try some things.”

Following the death of a loved one, many people are holding Zoom memorials since they can’t get together in real life. Kessler thinks virtual memorials are a good idea, as is planning an in-person gathering for a later date, once it’s safe to do so. Maintaining formality and structure helps elevate an online gathering. “You actually have to do a virtual funeral with all the respect that a real one has,” he says. “It doesn’t work if everyone just clicks in and watches. Someone’s in a tank top, Aunt Martha is eating her dinner in a La-Z-Boy while you’re putting your loved one to rest. You have to dress up for it, you have to have someone running it [like] clergy. The funeral home will stream the casket, you can have music. You can’t make the virtual funeral like another Zoom call or it’s going to leave you feeling empty.”

Kessler suggests that people who are feeling lonely in their grief make a “direct ask” to a friend: Tell them you’re struggling and schedule a time to talk on the phone, rather than reaching out spontaneously with the risk of missing them.

When comforting a grieving loved one, Devine encourages people to resist the temptation to problem-solve. “Don’t jump in with ‘solutions,’” she cautions. “‘It’s not that bad’ or ‘Have you tried broccoli?’ These things have the net effect of silencing someone’s pain.”

“When we judge our grief and judge our feelings, we don’t feel any of them, and that takes even more energy.”

In his work, Kessler has noticed a unique and often destructive phenomenon, a byproduct of the self-help movement, which he calls “feelings on feelings.” This involves judging or commenting on our own feelings as we’re having them. “We’re sad, but we shouldn’t be sad, because no one’s died. Or our grandparents died, but they had a long life, or I’m angry, but I shouldn’t be angry. We have all these feelings that are half-felt,” he says. “And I tell people: Stay in the first generation of emotions. The key to grief is if you’re angry, be angry; if you’re sad, be sad. But when we judge our grief and judge our feelings, we don’t feel any of them, and that takes even more energy.”

Kessler, with permission from Kübler-Ross’s family, recently added a sixth stage of grief: meaning, which he hopes could serve as a powerful tool for moving forward. Finding meaning, as Kessler defines it, involves seeking out the good in a tragic situation. This isn’t the same thing as finding a “silver lining.” You’re looking for indications of good coexisting with tragedy.

As an example, he talks about a patient he worked with who survived the Las Vegas shooting. He told her to look for the good. Amid the horror of her memories, she recalled seeing people get a man into a wheelchair and out of the line of fire to safety.

“Some of us are going to come out fine,” Kessler says, when it comes to surviving the pandemic. “Some of us are going to come out with post-traumatic stress. I want to help people to come out of this with post-traumatic growth. The horror doesn’t go away, the [fact that] people died doesn’t go away. It takes time and it takes recognizing the good.”

Cole Kazdin is a writer and Emmy-winning television journalist living in Los Angeles. She is a regular contributor to Vice, has written for the New York Times and Refinery29 and has been featured on NPR as part of the Moth Radio Hour.

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For people with irritable bowel syndrome, it’s common to hear that symptoms such as cramping, alternating diarrhea and constipation, and bloating are “all in their head.” In the case of IBS, there’s actually some truth to this.

It’s not that their symptoms don’t exist. IBS is a very real disorder, and managing its physical toll often becomes an all-consuming effort. The litany of concerns that accompany so many activities — always scouting the closest bathroom, making sure you can reach it in time, farting in public — keeps many people with IBS from having a social life.

Yet according to some experts, IBS is not solely about what’s going on in the digestive system; rather, the brain exacerbates the condition. “IBS is a disorder of brain-gut dysregulation,” explains GI psychologist Sarah Kinsinger, who is also co-chair of the psychogastroenterology section of the Rome Foundation. Accordingly, addressing the “brain” side of IBS through cognitive behavioral therapy with a trained psychologist may help decrease both the anxiety that’s often associated with the disorder and its physical symptoms.

“CBT really should be the first-line treatment for people with IBS. It’s the treatment with by far the most empirical support, and when done well, it can be curative,” says Melissa Hunt, associate director of clinical training in the psychology department at the University of Pennsylvania.

In a series of trialspublished last year, researchers in the UK compared the standard treatment for IBS (typically diet and lifestyle modifications and/or medication) with eight sessions of CBT delivered over the phone or online. Before and after the trials, participants answered questionnaires designed to measure their anxiety, depression and ability to cope with their illness. Two years after the trials, 71 percent of the phone-CBT group and 63 percent of the online-CBT group reported clinically significant changes in their IBS symptoms. Meanwhile, less than half of the standard-treatment group reported such an improvement. Those who did CBT also exhibited lower levels of anxiety and depression and higher coping ability than other participants.

In an earlier meta-analysis (a study of studies), published in 2018 in the Journal of Gastrointestinal and Liver Diseases, a different team of researchers also found that CBT appeared to reduce both psychosocial distress and the severity of IBS symptoms, with a greater effect on the physical symptoms than on the mental ones.

Explainers

The brain-gut connection

How this happens is not completely clear at this point, but it’s believed to have something to do with how the gut and brain communicate.

“IBS is thought to be a disorder of centralized pain processing,” Hunt explains. “There is miscommunication between the pain centers in the brain and the nerves in the gut. In people with IBS, pain signaling gets inappropriately amplified.” Discomfort that wouldn’t even register in the majority of people feels like being stabbed in the gut to a person with IBS. “The best way to address that is to find ways to help reduce pain signaling, and that’s with a psychologist,” Hunt says.

CBT for IBS entails learning relaxation techniques, such as diaphragmatic breathing and progressive muscle relaxation, which help reduce the “volume” of the pain signals by activating the parasympathetic nervous system, i.e., the body’s “rest and digest” response. “This can also lead to increased blood flow and oxygen to the digestive system, which helps the GI tract to function in a more rhythmic way,” says Kinsinger, who is also an associate professor at Chicago’s Loyola University Medical Center.

CBT also involves thought restructuring. IBS can cause a cycle of worry: Worrying about symptoms leads to being hyperfocused on the slightest hint of any symptom, which increases anxiety, which aggravates symptoms. People with IBS also often catastrophize, meaning they assume the worst will happen (“If I have an accident at work, I’ll get fired and never get another job”), develop social anxiety and become withdrawn. CBT addresses these issues by shifting attention away from IBS symptoms and using exposure therapy to help people gradually engage in more activities outside their homes.

Additionally, using CBT, people with IBS learn to identify and change dysfunctional ways of thinking. For example, consider someone with school-aged children who asks their spouse to attend all school functions because they’re afraid of farting in a room with other parents, which would inevitably cause humiliation and might even make people think they’re disgusting A therapist might ask them how often they notice bodily noises from other people to help them realize that we’re a lot more cognizant of our own bodily functions than other people are. “In other words, we identify the catastrophic beliefs and then search for evidence supporting them or not,” Hunt says.

CBT is a skills-based, goal-oriented approach to treating mental disorders that emerged in the mid-20th century. All CBT programs share the same underlying goal of helping patients identify and modify negative or unhelpful thought patterns and behaviors. “It teaches patients techniques that they can then implement on their own.” says Kinsinger. “It can be done pretty efficiently, depending how motivated and receptive one is to learning these skills.” But over time, customized versions of CBT have been developed for specific conditions including insomnia, schizophrenia and IBS. Different versions of CBT use different techniques, such as role-playing, exposure therapy and relaxation exercises, and vary in length. On average, CBT for IBS lasts between 4 and 10 sessions in total.

Jeffrey Lackner, professor and chief of the division of behavioral medicine at the University at Buffalo, SUNY, says their program is structured like a course: “You learn a specific skill to manage your GI symptoms, process information differently or respond to stress in a less extreme way. Then you practice that skill in session before using it in the real world.” Often therapists also give patients homework to fine-tune the skills they learn. They come out of CBT with a toolbox of techniques to manage the day-to-day burden of IBS.

Some people with IBS do CBT on their own, using self-help books, online materials or apps without ever seeing a therapist. “Not many psychologists are trained to treat GI disorders specifically, so physicians don’t often have anyone to refer patients to,” Kinsinger says. The Rome Foundation trains psychologists and maintains a directory of gastrointestinal psychologists, but if someone can’t find a provider in their area, Hunt and Kinsinger recommend looking for a psychologist who’s trained in CBT and has experience treating chronic pain, panic disorders or anxiety.

Reducing sensations vs. reducing sensitivity

Not everyone is fully on board with CBT for IBS. One 2018 review study found “insufficient evidence to demonstrate the effectiveness of online CBT to manage mental and physical outcomes in gastrointestinal diseases” including IBS. A different 2018 review concluded that although psychological treatments for IBS appear to help in clinical trials, it’s unclear if they work in other settings and which treatments — such as CBT, mindfulness-based stress reduction and guided affective imagery — are most effective.

IBS is a complex problem, and some doctors prefer to integrate CBT with other treatments. But “by the time we see them,” Lackner says, “many of our patients have found that the medical treatments have not provided adequate symptom relief.”

Some IBS patients also find thetraditional approaches too hard to stick with. The most commonly prescribed treatment is a “low-FODMAP” diet, which requires giving up all dairy and legumes, plus many grains, fruits and vegetables. “Some trials show that even if the diet reduces or eliminates GI symptoms, it doesn’t improve quality of life because it’s crazy restrictive,” Lackner points out.

“With IBS, the nerve endings in the gut have become hypersensitized, and the brain magnifies those signals in the gut,” Hunt says. “The low-FODMAP diet tries to reduce the sensations, whereas CBT reduces the hypersensitivity. When you turn down the volume on the sensations, then you can eat whatever you want.”

Whether CBT helps with this brain-gut dysregulation, addresses distorted thinking and anxiety, or increases confidence in a person’s ability to manage gastrointestinal symptoms — or all of the above — it’s helped people with IBS resume parts of their life they’d put on hold.

Brittany Risher is a writer, editor and digital strategist specializing in health and lifestyle content. She's written for publications including Men's Health, Women's Health, Self and Yoga Journal.

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